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About rickops

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  1. Hi, I have an update and a question: As I posted before, my daughter has a rather severe peripheral motor neuropathy, and though we've been to the Mayo Clinic, we have no explanation for the cause, or a plan for a treatment. Basically, Mayo said they thought that she'd recover the use of her hands and feet. That this was not progressive. We have an app't with a gastroenterological clinic in 2 weeks to test for celiac disease. We went to a naturopath last week, and were told that she has severe issues with her large and small intestine (sounds like celiac) and were given digestive enzymes, vitamin/mineral supplement, immune system booster, and detox formula. They said that if we took care of the digestive and maladsorption issues, the neuropathy would take care of itself. Now to my question: Her hands seem to have stabilized regarding loss of strength, but the muscle atrophy is alarming. Does anyone know of any help to speed up the healing of the neuropathy? Will healing the celiac disease damage reverse the neuropathy by itself, as the naturopath suggested, or would some medical intervention such as IVig aid in her recovery? There is so little information that is clear, and it is hard to decide what to do. We have a follow up appt. with the OHSU neurologist scheduled 2 weeks after we see the gastro clinic doctors, but I was wondering if any of you have first hand experience that speaks to this question. Thanks. Rickops
  2. Thanks to all of you who took the time to offer anecdotes and advice. You have been a tremendous encouragement to my wife and daughter and I. Nora, I visited the site you listed, and printed off a number of the articles to show to our doctor. I'm not convinced that we need to go back to the Mayo Clinic at this time. I think we can do the tests you folks recommended from here. We are blessed to have a doctor who is open to check on anything he can to help our daughter. The more I read your personal stories, reference articles and advice, the more I become convinced that Stephanie's neuropathy is caused by celiac disease. I think she has had it for a long time. We have immediately gone on a gluten free diet as a family, and are looking into getting some liquid vitamin and mineral supplements for our daughter. We will contact our doctor next week to share our (and your!) research with him. Hopefully do some tests for celiac disease soon. I will keep you posted as to Stephanie's progress. Wouldn't it be something if you, in your collective wisdom solved Steph's problem, when the famous Mayo Clinic couldn't? Thank all of you so much for your concern and input. We'll stay in touch. Rickops
  3. Hi, this is my first post on this forum, but I've been reading the posts all day. Hopefully someone can help... My daughter just turned 18 last month. This summer she developed a motor neuropathy in both feet (they were both unable to be raised), and her right hand (extreme weakness and uncoordination, and atrophy of the muscle between thumb and index finger). These symptoms manifested themselves over a period of about 1 month. We have since been to neurologists, and even to the Mayo Clinic in Minnesota. She has had exhaustive neurological testing, but the tests revealed no evidence of the obvious (and scary) diseases which present this way, ie. ALS, MS, cancer, etc. Even the Mayo doctors are baffled. Over the intervening 4 months, she has shown significant improvement in foot strength, and has regained some right hand coordination also. In light of our doctors' consternation, my wife and I have been doing extensive research on the web, and have really focused on celiac disease. Peripheral neuropathy is listed as a more rare symptom of celiac disease, but always with SENSORY neuropathy, not just MOTOR. Stephanie has no sensory loss at all, or burning/tingling, etc. For history, my mother had rheumatoid arthritis, and I have Hashimoto's thyroiditis. Steph had severe recurrent stomach aches as a small child, and was diagnosed with IBS. She also has had SEVEN broken arms over her first 14 years. No doctor could ever find a reason for the abnormal amount of fractures, but no one (even the gastroenterologist) suggested Ciliac. From what I've read, she seems to be a candidate for celiac disease or gluten intolerance, but I've yet to see a motor-only peripheral neuropathy. Has anyone ever seen this type of neuropathy associated with advanced ciliac disease? We are all at our wit's end, and desperately looking for answers. Any help would be very much appreciated. Thanks! Sorry this is so long... Rickops
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